Winnipeg man with Parkinson's disease sails on

Winnipeg's Steve Van Vlaenderen and his partner, Darlene Hildebrand, are starting out on the second half of their sailing voyage of the Great Lakes from Sarnia. The trip is raising awareness for Parkinson's Canada. Van Vlaenderen was diagnosed with Parkinson's in 2011.Paul Morden / Paul Morden/The Observer

Steve Van Vlaenderen is sailing the Great Lakes for himself, and for others living with Parkinson’s disease.

The 69-year-old Winnipeg man and his partner, Darlene Hildebrand, spoke Monday in Sarnia before starting the second leg of their journey through the Great Lakes that began last summer and is set to continue until they reach the St. Lawrence River in the fall.

“I wanted to demonstrate to people with Parkinson’s that you don’t have to give up your dreams,” he said.

“Don’t let Parkinson’s take anything away.”

Van Vlaenderen, a retired business owner, said he had wanted to sail all his life and bought a 31-foot sailboat named, Cloud, a year before he was diagnosed in 2011.

“The neurologist recommended that I give up sailing” because of the slowing movement and balance issues that come with Parkinson’s disease, he said.

“Well, I didn’t do that.”

He had dreamed about sailing the Great Lakes and asked Hildebrand to join him on the adventure.

After sailing through Lake Superior and Lake Huron over two months last year they took the sailboat out of the water in Sarnia for the winter and were set this week to launch the second part of their journey through the lakes.

Over the next two and half months they plan to travel the St. Clair and Detroit rivers to Lake Erie, through the Welland Canal and into Lake Ontario. They’re aiming to reach the Thousand Islands area of the St. Lawrence River before ending the voyage, and having the boat trucked back to Sarnia in September.

They’ve partnered with Parkinson Canada to raise awareness about the incurable degenerative neurological disease caused by the loss of dopamine producing sells in the brain.

More than 100,000 Canadians have Parkinson’s disease and while the most common symptoms are tremors, slowing movements, muscle stiffness and problems with balance, others are less visible.

“Parkinson’s is like an iceberg,” Van Vlaenderen said.

“Ninety per cent you can’t see, and it’s the 90% that affects people the most.”

Those less visible symptoms include depression, anxiety and apathy.

Van Vlaenderen said he finds the anxiety brought on by Parkinson’s more difficult to deal with than the tremors.

“Parkinson’s is a serious disease,” he said.

“They’re anticipating that the number of people that have Parkinson’s will double in the next five to 10 years.”

Van Vlaenderen said he relies on “extensive planning” to be able to anticipate and work through each move needed on the boat.

“When I’m sailing on the Great Lakes, I don’t think about Parkinson’s at all,” he said.

“To me, it doesn’t exist.”

Hildebrand said she noticed last summer that when they were sailing along with another couple they met on the trip that it might take Van Valenderen twice as long, or more, to complete tasks like readying the boat to leave port in the morning.

Small motor skills, such as tying and untying knots, are the tasks most impacted, she said.

“He can still do it, he just has to plan for the extra time,” she said.

On a typical day, they expect to sail 42 to 45 nautical miles over eight to 12 hours, “depending on the wind,” Van Vlaenderen said.

They plan to visit 27 ports this summer and travel a total of 800 nautical miles.

They’ve set up a website, http://www.sailon.ca, to share their voyage and to encourage donations to Parkinson’s Canada.

“I find sharing my experiences on the Great Lakes very therapeutic,” Van Vlaenderen.

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